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1 in 20000

1 in 20000

Author: Suno India

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There are more than 7,000 documented rare conditions in the world. While there is no known cure for some conditions, where there is a cure (or maintenance through medicines is possible), the cost of medication is exponentially high to bear. This podcast will focus on the status of rare conditions in India, which has been talked about very little in Indian society. It will be a one-of-its-kind attempt in India to document the gamut of challenges and achievements of people with rare conditions and will open a constructive dialogue on what can be done. This is important because an estimated 1 in 20 Indians are affected by a rare disease. The series will bring out the human face behind rare conditions – the patients, the families, caregivers, doctors, activists and geneticists working to improve life for people with rare conditions.
7 Episodes
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A long wait

A long wait

2019-08-2800:23:00

The final episode of 1 in 20000 touches upon the legal rights of rare disease patients. In this conversation with Advocate Ashok Agarwal, who practices in the Delhi High Court, we get a glimpse of the distance India still has to go on securing a life of dignity for them.For more stories like this, you can listen on www.sunoindia.in (http://www.sunoindia.in/) . Also follow us on Facebook (https://www.facebook.com/sunoindia.in) , Twitter (https://twitter.com/SunoIndia_in) or Instagram (https://www.instagram.com/sunoindia.in) .
The Gene Story

The Gene Story

2019-07-2900:32:44

Genes are the building blocks of our bodies and are responsible for the diversity of physical and other characteristics found in humans. They are incredibly complex for us to understand, but geneticists and the scientific community are developing new ways to sequence them, thus determining the exact ways in which genes create life. Everybody is unique, has its own needs, and this is true for the bodies of people with rare conditions too. A whopping 80 per cent of rare illnesses are genetic in nature causing lifelong health complications.In this episode, Dr Deepanjana Dutta, a genetic counsellor, traces the gene story. She discusses what we know about genes until now and how medical cures are developed. She also shares her experiences of counselling people who have had to face not just medical but social challenges since genetics is little understood in the country and diversity in the body is often unwanted.For more stories like this, you can listen on www.sunoindia.in (http://www.sunoindia.in/) . Also follow us on Facebook (https://www.facebook.com/sunoindia.in) , Twitter (https://twitter.com/SunoIndia_in) or Instagram (https://www.instagram.com/sunoindia.in) .
A Father's Journey

A Father's Journey

2019-06-2800:36:17

A family is changed forever when a loved one is diagnosed with a rare disease. In this episode, Mr Iftikhar Zia discusses his experience of raising a son with a rare disease, how his family became close-knit as a result, and the joys they have experienced in spite of chronic challenges.
An equal partner

An equal partner

2019-05-2800:24:29

We all want empathy, understanding and love, but how do these play out for people with rare diseases? In this episode, listen to a seldom heard perspective of an able bodied woman Sangeeta Goyal and her choice of partner who uses a wheelchair. She shares her journey of being a couple, and their trials and joy.
Living Rare

Living Rare

2019-04-2800:18:31

What is it like to live with a rare condition? In this episode, Mr Vipul Goyal gives a peek into his world, the time he was diagnosed with muscular dystrophy, how he turned his struggle into a strength and what made him contribute to the lives of people with rare conditions. He is currently a co-founder of the Indian Association of Muscular Dystrophy.
Care for a rare

Care for a rare

2019-03-2800:22:02

In this episode of 1 in 20000 Avantika speaks to Mr. Prasanna Shirol, the founder of ORDI, a rare disease patient care and advocacy organization.
Introducing 1 in 20000

Introducing 1 in 20000

2019-02-2800:25:521

An estimated 100 million Indians are said to suffer from any of the over 6000 rare diseases found in the world. So how is it that the conversation is so limited and restricted to only those who get impacted? This podcast 1 in 20,000 will answer this and many more questions. On World Rare Disease Day, we are honored to launch India’s first podcast on rare diseases hosted by Avantika Shrivastava.
Comments (1)

Sonali Singh

👏👏👏

Mar 25th
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